Precision Medicine: The Role of the MSIDS Model in Defining, Diagnosing, and Treating Chronic Lyme
One of the greatest challenges the Lyme community has faced during the past several decades is defining, diagnosing and effectively treating chronic Lyme disease/PTLDS. PTLDS has been defined in the medical literature as “a syndrome in patients who have been treated for an erythema migrans rash (EM) with appropriate antibiotic treatment who have persistent or recurrent patient-reported symptoms of fatigue, musculoskeletal pain, and/or cognitive complaints with associated functional decline. Although it has been defined, the etiology of ongoing symptoms in PTLDS still remains controversial. Theories of why patients remain ill generally range from autoimmune reactions post infection to tissue damage and/or persistent infection of the spirochete and/or its parts. No one model, however, has been sufficient to explain ongoing symptomatology after standard courses of antibiotics”. With regards to chronic Lyme disease, the situation is more complex. There is no one accepted definition for chronic Lyme disease, nor a working model to properly diagnose and treat chronically ill patients. Healthcare providers and patients often lack a map to navigate the complexities of this disease, leading to long term suffering, rising health care costs, as well as increased morbidity and mortality. Dr Phyllis Freeman and I therefore recently published a data mining study in the journal Healthcare (see link below) to help answer these important questions.
As a member of the HHS Tickborne Disease Working Group, we grappled with these issues during the past year. Apart from the need to provide Congress and the American people with an up-to-date overview and report of disease vectors, surveillance, and prevention; pathogenesis, transmission and treatment; testing and diagnostics; vaccine and therapeutics as well as access to care services and support to patients, we felt it was important to define chronic Lyme disease. This group represents the majority of those still suffering with “medically unexplained symptoms” apart from those suffering with PTLDS. I have treated over 13,000 chronically ill patients with tick-borne disease during the past 30 years and based on the needs of our working group and the Lyme community, Dr Freeman and I decided to do a data mining study of 200 patients with chronic Lyme disease/PTLDS treated with dapsone combination therapy (DDS CT). This allowed us to evaluate the efficacy of these new “persister protocols” in chronic tick-borne illness (validating our prior published work on dapsone combination therapy) and evaluate the role of coinfections. Detailed data mining also provided us the opportunity to examine the role of overlapping abnormalities on the MSIDS map causing inflammation, and how their downstream effects can potentially lead to chronic illness. The link below in the journal Healthcare represents the results of a 6-month data mining study on 657 volumes of charts in those with chronic Lyme disease/PTLDS. Much of the information is brand new and never before published in the medical literature. We are very excited to share it with you.
Among the conclusions of our study: “We suggest that patients now be considered to have “Lyme-MSIDS” and believe that this term best describes the multiple biologic and biochemical abnormalities that can be present after an infection with Borrelia burgdorferi (whose etiologies go beyond tick-borne disease), causing chronic illness. Each patient is unique, and each treatment approach must be individualized...The MSIDS model helps provide a framework for diagnosing and treating complex chronic Lyme disease patients that have a multiplicity of symptoms, along with a map of up to 16 potential factors that may need to be addressed. These factors can keep a patient chronically ill, but these abnormalities are not regularly accounted for in routine standards of patient care. Establishing a uniform definition of chronic Lyme disease will facilitate diagnostic and treatment decisions and allow comparison among varied cohorts of patients”.
“The rising numbers of individuals suffering with Lyme disease and other long-term disabling illnesses (like CFS, FM, autoimmune disease and Alzheimer's dementia) alerts us to a necessary shift in the paradigm for the diagnosis and treatment of chronic disease. An integrated, interdisciplinary systems-biology approach described in this study may help us to better understand Lyme and associated diseases”.
Precision medicine is the medicine of the future, and the MSIDS model is a proven precision medicine approach, tested over three decades. There has been too much suffering for too long. The approach described in this article (and in my two books, “Why Can’t I Get Better? and “How Can I Get Better?”, St Martin’s Press, 2013, 2017) helps provide a map and answers for those patients and healthcare providers desperately looking for answers. My wife is now one-year symptom free in remission since doing dapsone combination therapy and treating all of the abnormalities on the MSIDS map. I wish the same blessing of health for you and your loved ones.
In service and in health,
Dr Richard Horowitz
Acknowledgments: We acknowledge with thanks the Bay Area Lyme Foundation (BAL) and the MSIDS Research Foundation (MRF) for providing us research grants for the data mining portion of this study. I would also like to express my appreciation to my colleagues and subcommittee members on the HHS Tickborne Disease Working Group for their dedication and expertise in the diagnosis and treatment of tick-borne disorders.
Disclaimer: The views expressed are those of Dr Richard Horowitz, and do not represent the views of the Tick-Borne Disease Working Group, HHS or the United States